Interview with Judi Chamberlin

lh: How did you come to do the work that you do?

jc: It was all based on my own experiences with the mental health system. I saw that something was very wrong and that people needed to do something about it- especially the people that this was currently happening to. Five years after I got out of the hospital, I found one of the [ex-patient] groups in New York. I found out that there were other people who felt the same way! It just seemed so logical to us that locking people up and depriving them of their basic humanity couldn’t possibly be good for anybody.

lh: What issues did you focus on when you first organized over thirty years ago?

jc: It’s the same stuff we’re doing now. Just trying to get the issues across. That this is about rights, it isn’t about “better treatment” or about needing people to take care of us. We’re human beings, we’re citizens. Why don’t we have these rights that supposedly the Constitution and the Bill of Rights talk about? Why does it suddenly not apply to us?

lh: Was there an attempt in the beginning to reach out to the feminist movement?

jc: We tried to reach out to everyone. The early 1970s was a time when all these movements were growing. We made some good contacts with the gay rights movement. But I’ve always felt that the feminist movement just didn’t seem to get it. There are an awful lot of therapists in the movement, and when you talk to women who identify as feminists, and you mention that you’re involved with mental health issues, they always mention Phyllis Chesler’s book Women and Madness. But Phyllis Chesler’s a psychologist, and it’s a book in which somebody else talks for us. And this comes from a movement that says that women should speak for themselves, but somehow they think it’s OK that a psychologist should talk for women who are “mentally ill” and getting locked up. She gets it so wrong in that book, and it really hurts me when that’s considered a feminist classic.

lh: How are women uniquely affected by coercive psychiatry?

jc: Well, there’s an assumption that if you have a psychiatric diagnosis, you couldn’t possibly be a good mother. There’s also a distinction made between women who are distressed and women who are “crazy.” You see this in the battered women’s’ shelters and the crisis centers, that if you’re battered and subsequently distressed to an “appropriate” level then that’s OK, but if you’re distressed beyond that, you get packed off to the mental health system. And that’s awful. A long time ago, a group of women at one of the psychiatric survivors’ conferences said, “we reject the idea that there’s an ‘appropriate level for our anger’ when we’re raped or battered.”

lh: Can you talk about the experience of writing On Our Own!

jc: At the time I wrote it, there wasn’t anything in print about our experiences. There’s a long history of people writing books about their mental health experiences, but certainly not about so-called crazy people getting together and organizing for rights and liberation. I really wanted to get that message out. Over the years, so many people have told me, “that book helped me, it came along and let me know I wasn’t alone. I was able to get through what I was going through, and to hook up with other people and get involved.” You couldn’t ask for more than that as a writer.

lh: It seems that some of the advances made by our movement, however small, are being slowly eroded. Can you speak a little bit more to that?

jc: When I first got involved in the early 70s, the mental health system was very different than it is today. In some ways it was much worse, because you had the long-term institutionalization that exists less today. And in some ways it was much better-because there wasn’t this biological determination, this idea that everybody needs to be on drugs forever. And so today you may or may not be in an institution, but you always have to be in “treatment”-engaged with the mental health system in some way. And the mental health system becomes so all-encompassing-providing housing, etc. All the services are provided on the condition of you being “compliant” with the system. And that didn’t really exist before.

lh: And I think it gets back to how psychiatry is so all-pervasive in our culture.

jc: Yeah, and how people are so convinced that what we’re dealing with here are “brain diseases,” and I’m sure if you asked the average person on the street what causes mental illness, they would say that it’s a gene, or a chemical imbalance in the brain-all these little slogans that there’s no scientific evidence for! The science isn’t there to back this up, but the PR certainly is.

lh: Can you tell me a little bit about the Bush administration shutting down the Technical Assistance Centers (TACs) such as the National Empowerment Center?

jc: It’s this little tiny federal program – all five TAC’s – it’s all together a $2 million dollar program, which doesn’t even compute on a federal level. And here the administration went out of its way to single out this teensy little program. You’d think on a superficial level, we would fit in well with their Republican right-wing agenda-people being self-sufficient and “getting back into society.” The initial attempt was to yank our funding right then and there, before the end of fiscal year 2003, and that we fought. And I think the administration saw that we could rally support, and we did rally thousands of phone calls and emails. So we got our funding for the rest of the fiscal year, but with a cut.

lh: Can you say more about what the TACs do?

jc: Three out of five of the TACs are run by consumers and survivors. They provide information, and technical assistance and knowledge, about self-help, about rights, about connecting up with others who have experienced psychiatric abuse. There’s so much that you can read about drugs, and institutions, and formal programs. It’s much harder to find information about alternatives, information telling you that people can get better, and saying “here we are, people who’ve been diagnosed with these supposedly lifelong illnesses, who are functioning well.” We provide a lot of hope for people that they can do it too. I think it’s very important to be out there. There are limits to what TACs can do because they are government-funded. So I think it’s important to have the independent groups out there, it’s important to have the government-funded groups-it’s important to have the whole range.

People need hope. When you get diagnosed with a major mental illness, you’re probably also told that you have something wrong with you on a genetic or chemical level, that you have to be on drugs for the rest of your life, that you’re probably never really going to get better. That’s taking hope away from people. So to provide hope for people-it’s just thrilling. All the letters, the phone calls, the emails we get. People didn’t know, until they found us, that they can recover, that they can have a good life, that they’re not just doomed to being good little mental patients. That’s very important.

lh: On the issue of forced psychiatric treatment, what do you say to people who tell of friends or relatives who were forced into treatment and were actually helped by it? The idea that “by criticizing the mental health system, you’re discouraging suffering people from seeking help?”

jc: Help is only help if you think it’s help. I certainly don’t want to take any options away from people. I want to increase people’s options. So if somebody has a lot of options, including medication, and they decide that medication’s the right one, that’s very different from medication being the only option, and it being forced on people. It’s a strange kind of reasoning. The one that always gets me is, “if we had been able to get our relative into treatment, she or he wouldn’t have killed themselves.” That might be a way of soothing your pain, and if you want to soothe your pain that way, OK, but you don’t know that.

When I was in the crisis center, I had this real break with reality kind of situation, and after a couple weeks of being in this totally supportive and helpful environment, I was OK. And for years afterwards, I would think, “well, I’ve had two breakdowns in my life. One was really severe, because it lasted for so long, and one was pretty mild because it was over quickly.” Then I realized that if the first time, I had been treated like a human being instead of being hospitalized in this horrible place and treated as less than human, maybe that one would have been over in a couple of weeks too. And again, we are not about trying to take away from people anything that they find helpful, it’s about giving people choices and information. Anyone who’s opposed to giving people more choices and information. I just don’t get it!

lh: What is your vision of an alternative to the mental health system?

jc: There’s no single model because different things work for different people. The idea is to give people the space to find what it is that makes them feel better, and to help them get away from what makes them feel worse. And to find ways to enable the things the person wants to happen for her. And ideally there should be multiple settings where that takes place. It could be in your home, if that’s the most comfortable place for you, or in someone else’s home. I would say probably not in an any kind of institution, because institutions by their nature are very dehumanizing.

lh: What would you say to women who are going through a crisis and don’t have access to alternative services?

jc: It’s very hard. If someone needs something today, to tell them we’re trying to make it possible soon isn’t enough. They need to know that so many people have recovered. And that there are so many people who still have symptoms, but they are working, they are going to school, they have a social life, a love life. There’s real life out there. That’s our biggest unity with the disability movement. Even if you have a disability so severe that you can’t move your body, you can still live a full life. And we too may need some extra help or some extra accommodations. But that shouldn’t get in the way of living a full life. The idea that you can’t have these things unless you’re “normal” disenfranchises an awful lot of people. The fact is that people are living their lives and making choices with disabilities of all kinds. As a society, we are so fixated on the idea that there’s only one way of doing things. I’ve learned from my work in the disability movement that people possess an amazing variety of capabilities. The human spirit is what’s important.

Leah Harris interviewed Judi Chamberlin, who is a psychiatric survivor and an activist since 1971 in the consumer/survivor/ex-patient movement. She has been a member of the Mental Patients’ Liberation Front (MPLF), one of the earliest ex-patient groups, since 1975. MPLF operates the Ruby Rogers Advocacy and Drop-In Center in Somerville, Massachusetts, a self-help center which she helped to found in 1985, and which is run by and for people who have received psychiatric services. Chamberlin is the author of On Our Own: Patient-Controlled Alternatives to the Mental Health System and has also written numerous articles about the movement, self-help, and patients’ rights.

Chamberlin is affiliated with the Center for Psychiatric Rehabilitation at Boston University, where she directed studies of people who use ex-patient run self-help groups, and on personal assistance services for people with psychiatric disabilities. She is also a co-founder and associate at the National Empowerment Center, in Lawrence, Massachusetts, a federally-funded technical assistance center which serves the consumer/survivor/ex-patient movement.